Treatment after prostatectomy

I was diagnosed in Dec and had a Gleason of 9 but I also have the BRCA 2 genetic defect which leaves me predisposed to highly agressive prostate cancer. I am lucky that my doc caught it early because my MRI and PSMA Pet scan show it it all contained in my prostate.

I saw 5 docs after i was diagnosed and i was told that after surgery, because of my genetics, it will (more than likely) return and I will have to go on YEARS of hormone thearpy along with radaition therapy. that didnt sit well with me.

I was lucky to find a study that is targeted to my genetics and am currently enrolled in the NePtune trial at University of Pennsylvania which is 6 months of hormone therapy (Lupron) along with the drug Olaparib. the idea of the study is to "kill" the cancer before surgery and push the chances of reoccurance much further down the road. 2 months into the trial and my PSA has gone from a high of 7 down to .77 with the goal of .1 or lower.

The trial results have been promising and those that have completed the trial and had surgery most have shown NO cancer in their prostate tissue post surgery.

There is no doubt this is a tough road for all of us and we have to find a way grind through it. I would seek out other opinions - look everywhere, see as many docs as you can. In my journey I found that all the surgeons were smart and capabile but not all had the knowlege for MY set of circumstances. When I questioned them about BRCA 2 many had no idea of the effects of that defect and surgery. Keep looking, keep picking the brains of smart docs, and find one that you are comfortable with but don't delay.

In the end, your husband has to keep fighting, flip the bird to cancer, and never give up. Surround him with family, friends, and keep him busy so he doesnt have too much alone time - support is a HUGE part of the mental battle. I dont like to be alone except for when I'm meditating and i focus on my prostate, the cancer cancer and talk to my body saying "look, the cancer is here - GO GET IT!" I'm sure I can't beat it that way but who knows- it sets my vision to the known enemy in my body and to keep fighting it.

My fav song quote is "in life having the upper hand's a myth, your only fighting chance is too stubborn to quit" - Zach Bryan.....

Good luck and sending good vibes your way !

I wish that Neptune trial had been available 15 years ago when I was diagnosed with prostate cancer, I didn’t find out I had BRCA2 until four years ago so for me the PARP is my last drug before chemo or Pluvicto.

You don’t mention your age did you get PC in your 50s or 60s?7

I have run into one person with BRCA2 that took a PARP for a few years and was alive 26 years Past diagnosis. So there’s even hope for a long life with what is available today, and even tomorrow.

Unfortunately, even the very best centers - and Mayo surely is one - have idiots on staff or people filling in for someone out sick or on vacation. It happens ALL the time!
Please don’t get discouraged by this one poor episode. Your husband’s situation is very serious and he absolutely needs treatment soon. Mayo has vast experience in G9 cases and it’s probably the best place for him to receive treatment.
I don’t know where you live but other centers of excellence are equally qualified to treat him - MD Anderson, Sloan, etc.
Phil
Phil

Prostate cancer that hits young is often very aggressive and moves fast — mine was in my spine at age 56 before we even knew I had it — so any advice you read for older people with slow-moving prostate cancer doesn't apply.

Your husband is *very* lucky they caught this before it metastasised to his bones or organs. A prostatectomy removes 100% of the cancer cells in the prostate, but 0% of any cancer cells that have made it just outside the prostate — radiation will catch them (it spreads out a bit), and Orgovyx will likely pause things for a while, so that you have more time to figure out a long-term treatment plan.

I'd suggest that you go with the doctors' advice: hit it hard and hit it fast now, while you have this window of opportunity, and maybe it will never come back.

Jeff, I read a new study that came out in 2025 that the combination of olaparib (Lynparza) and simvastatin (Lipitor) worked even better than either drug alone.
It’s interesting since for years there’s been a drug combo of doxycycline, a statin and metformin used to “holistically” treat PCa.

Well, yeah, not sure what you mean by "He already has had such a drastic change in the way he feels since prostatectomy." A year after surgery most side effects have disappeared less possibly ED and incontinence. If he is dealing with depression as a result of either, well, is he willing to seek counseling?

Given the clinical data you describe, he is high risk, ergo, his choices are ignoring and face the consequences, or, confronting it and dealing with it. I can well remember my pity party after my urologist called me with the biopsy results. He's entitled to a moment but then it's time to put the pity behind and get on with the business of managing his prostate cancer and living his life.

As I've said before, I've peeked behind the door of death by prostate cancer, it's a no for me and my medical team knows it.

Attached is my clinical history, I was diagnosed at age 57 in January 2014, high risk - GS 8, Grade Group 4, short time to BCR, rapid PSADT and PSASV...yet, just over 11 years later, here I am. I have packed a lot of living into those years, vacations, birthdays, graduations, anniversaries...wife and I are heading out to Sedona in April and then in May Lake Tahoe with our daughters.

Have I liked being on treatment, heck no.

There are ways to manage and mitigate the side effects:
Diet
Exercise
Managing stress

For me, the only difference being on versus off treatment is not in what I can do, just how I feel doing it. I've been skiing in Colorado with friends, done the Bataan Death March (26-mile hike) in White Sands and the Gravel Unbound, a 55-mile gravel bike ride through the Flint Hills of Kansas and travelled the Ring Road in Iceland with my wife while on ADT. The only restriction of treatment has been when doing radiation since it's continuous so no "vacations" during that time.

Mainstream clinical practice for his clinical history may be doublet or triplet therapy - https://pubmed.ncbi.nlm.nih.gov/36058809/, whether or not it is for a defined period or continuous is a discussion with his medical team. A question to discuss with his medical team maybe be whether to include a ARI to his current regimen of Orgovyx and radiation. By the way, where is that radiation too, the prostate bed, or, does it include the pelvic lymph nodes.

There are resources to assist you and him in understanding this journey, the Prostate Cancer Foundation is one source - https://www.pcf.org, the Prostate Cancer Research Institute is another - https://pcri.org/

Both he and you may want to inform yourselves about the terminology, definitions and treatment guidelines associated with prostate cancer. They can guide your discussions with his medical team - urologist, oncologist, radiologist and the associated specialties.

Hs, and yours. life is different now, but there is a lot of life left.

Kevin

Interesting study. In my case I was prescribed Lipitor and it almost crippled me. I could not stand up without going in circles to get my body moving. Our friends asked my wife what was happening, was I sick, because it screwed me up so much. My oncologist figured it out after a few months. I was on Lupron and thought that was the culprit.

A few years later I tried a different statin and had the same problem, My cholesterol has always been low fortunately.

And my next drug will be a PARP inhibitor. Arghhhh!

Thanks for the info. I’d say we need to learn this terminology. Wow..foreign language. We have yet to meet with the oncologist for discussion of his radiation treatment. Call should come this upcoming week. It’s very irritating this whole process has taken over a year to start treatment. He did start the Orgovyx on Thursday. His stamina has dropped drastically since prostatectomy. Lays down a couple times a day, on his days off. He’s never been one to complain or feel sorry for himself but he has had a lot thrown his way this past year. Thanking God he was only incontinent for about a month after the surgery but the ED is very stressful for him. I just want him here with me. All that matters to me. Doc did tell us it’ll be about quantity over quality for him. He definitely is getting depressed. Have a call to our GP for appt to discuss maybe antidepressant. Thank you for taking time to give me your thoughts. It’s very much appreciated. That graph you showed I’ve never seen one. I was only given his decipher, psa levels, scans and biopsy results. Thanks again.